Starting Chemo in November 2017
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Hello ladies. I'm new to the boards and will be starting chemo on 12/22 so I've been lurking on this thread. I'm struck by how many of you have the same chemo and targeted therapy I will be getting. So if you don't mind, I will track with this bunch as well as December's.
I've been reading about chemo prep, making sure to take ALL the nausea medicine offered, and planning for hair loss. But I have to admit being pretty overwhelmed by the list of SE my doc gave me for each drug. Before my dx, I thought of myself as pretty strong, mentally and physically, but I really question how I will react when faced with some of the situations I've read about here. Not like I have a choice, but as I take each step (buying a wig, getting a port), my stomach goes in knots and I get very distracted. It's been very comforting to read these discussions.
I look forward to some great discussions. Good luck with your treatments.
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Diveslikeagirl.... If you are feeling overwhelmed, ask for antidepressants and anti anxiety medication. Don't be a hero. Now is the time to start them so they have time to take effect. I think antidepressants should almost be required for cancer patients!
I think the waiting is the hardest part. Overwhelming and scary. You can do this!
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Today was the first day I didn’t need to lay down and rest! Go me! Although I got a new symptom but I think I have it figured out. My stomach keeps cramping something fierce, I did a little research and I am either dehydrated, which okay I have been a little lax on the water lately, or my white count is down and it’s causing a little instestinal upset. So I was good girl and chugged a bottle of water and it eased up some, of course then I proceeded to eat 6 spicy chicken wings and I will be paying for that tomorrow, but it was so worth it!!! Okay tomorrow I won’t think so, but we all swear on Sunday mornings we will never drink again and oh yeah we do it again. So I may say I will never do the chicken wings again but it will be a lie so I won’t bother.
Welcome Diveslikeagirl a girl to our little corner of the board, I wish I would of though to creep in October to find out all the ins and outs ahead of time. Instead I walked into my first chemo like a deer in the headlights. Live and learn.
Tina
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Wow, you girls have been busy! Just had 2nd Taxotere/Cytoxan this past Wednesday. Tina, I love the idea of using that app because I'm already trying to remember which days were the worst and which had the Big D and which were the bone pain. And, I hear you on the..um..poop! I felt like I was a Panda eating bamboo and it was just coming out. Sorry, girls! ;-)
Anyway, I hope everyone is doing well on your journey with chemo. I was sitting in the chemo chair Wednesday and I heard another patient "ring the bell" for his last chemo session-made me cry! I will ring the bell on January 17th, can't wait for that.
Have a good night ladies!
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Diveslikeagirl.....Welcome! You will get lots of support and information on this board. Good luck to you in your treatments. I agree, ask for something for the anxiety. I take an Ativan before every appointment.
Tina...I'm not good with my water either. One of my NP's suggested I keep a bottle of water with me at all times. And, when watching TV at night, take a few gulps during every commercial. During the day, when I'm home, I set my timer to go off every 30 minutes to remind me to gulp, gulp, gulp. It really does help me. I have 2 cups of decaf in the morning and 40-48 ounces of water in me before I hit the bed.
Hope
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DIveslikeag - Welcome! We are a diverse group, but many of us well into the start of our treatments. We are all open to any fears, concerns, anxieties, complaints, joys, recommendations, suggestions, ideas, experiences and always ready to cover your back through this. You will learn a lot hearing us gab. Everyone here has gone through that scary waiting period (should say several from the time of diagnosis). It’s the hardest part. Meowmmy65 is right about maybe getting a antidepressant of some kind. It helps you sleep better too. Your first treatment has the same date as my second treatment.
Mom4gma3- I thought I would be normal today and I was until I realized I really had no energy to do everything I planned to do. The fatigue got to me by noon and I’m sitting here just drifting again, but tomorrow will be better. Take care of that tummy. All I ate today was potato soup, but was good. I wish that front would get to us to cool us off!
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blair2- they keep saying cold but everyday it’s not! I don’t think they know what they are talking about! But I have a real nice breeze out here today!
I’m usually great with water I just think it’s because I have to drink it I don’t want to. Lol. Going to chug another bottle before bed!
Hope everyone has a good night!
Tina.
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Tina - I’ve cut down on my water intake. I get tired of drinking it when I’m not active. For a while I was going through half a gallon per day. I may be paying for it, don’t know. I drink juices and coffee on top of water intake. I was also eating jello, pop cycles on my sick days. Felt like a kid again.
I’m expecting that front here by morning, but I wasn’t too excited when the weather people said a high of 68. That’s not cold.
BTW - cute photo of you - on a Buccaneers float?
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Last night I pulled the trigger on the clippers. Actually my husband did.
I just couldn't take the intense shedding anymore. I was finding hair everywhere including my food and that was the last straw. So here I am in my hairless glory.A couple of things to note: I was happy to discover that my head shape is pretty normal. A little disappointed that there was no hidden treasure map hidden under my hair, but oh well. Hats and scarves stick to my head like Velcro now. It's a bit strange but it's about 10-20 degrees above zero here so I am covering up because it's REALLY cold without hair. And my hair stubble makes sounds on the pillow when I try to sleep. That was totally unexpected.
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blair2- no it was my Halloween costume for this year, my mom is huge about Halloween. Figured I would save it for gasparilla this year!!
Wind ispicking up and we got a severe storm warning coming through! Fingers crossed for some good rain. I don’t want to fill the pool.
Tina.
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Frozentoes- your husband did a good job! Yes, you have a normal shaped head and now you can be creative with scarves, hats, and wigs. You were lucky to have hair since the 13th of your treatment? Without your hair, it accentuates your big brown eyes! You're also lucky to be young. Bald heads look better on the young.
I'm just waiting for signs of my hair falling out. I shed a lot anyway. I saw a law commercial on tv asking if you took taxotere and had permanent hair loss to call their number. That's what my drug is - I sure hope my hair grows back. Seeing that commercial didn't make me feel exacwarm and fuzzy.
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I think I have a chemo burn or phlebitis in my infusion vein. I didn’t think much about the big red splotch near my infusion site because I thought it was related to the rash on my hands, but tonight I noticed my skin is red along the vein all the way to the elbow. It doesn’t hurt and my arm isn’t swollen. The vein isn’t hard or inflamed.The big splotch burns a little, but not too bad. If it gets more painful, I will call the nurse line tomorrow. It’s something different every week.
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blair2 my Onc specifically told me Taxotere causes permanent hair loss in some people. It scares me too. I read about 6% have permanent hair loss. I had my head shaved on day 17. The stubble does drive me mad, but I think that's beginning to fall out too. One plus is my annoying PCOS facial hair is gone. I would be OK for it to stay gone.
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Orange Daisy... Did you try benadryl for redness and burning?
My first infusion was Thursday. In the evening, my neck, face, and chest flushed red and was warm, plus was puffy. Less red, more puffy in the morning. No pain or fever. By 5:30 last night, it was back with a little itching, and more swelling at the base of my neck on the port side. I called the on call oncology number because they stressed calling early with specific side effects (like fever) or anything i was unsure of. He said probably an allergic reaction. Benadryl and watch for fever. But he was very concerned about any reactions.. redness, pain... At the port site itself. I think you should call them sooner, rather than later. Hopefully, by the time you read this, it has resolved and feels better. But if not, call them!
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I'm sorry about your SE meowmmy . I hope you will bee fine soon .told us what will happen soon.
please sister, did anyone know why some doctor start chemo before surgery? did chemo can eliminate the number of nodes involved from two to one? I know the chemo reduce the size of tumour but I have no ideas about nodes and it's work over their !
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Hope99- I think some start chemo before surgery to get any spread sooner. If you have surgery first you have to wait until you heal from surgery before they can do chemo because your surgery won’t heal very well once chemo starts. My cousin is 4, he was diagnosed with Wilma tumors on both kidneys in may 2017, they did chemo from may until August trying to shrink the tumor on his kidneys. It worked a little on his one but in August they removed his really bad one. Now he’s back doing chemo but not as aggressive as they were. so that would be the reason behind chemo first. I was glad they did mine first because they put the port in at the same time and I was relieved the tumor was gone because it was growing so stinking fast. As a nursing professional I can understand the reasoning behind doing chemo first, but as a patient I would rather have it out ASAP! Since yours was in the nodes they are wanting to destroy any cells that have escaped through those nodes before they worry about the cells in the breast. It’s way more important to stop any cells from growing anywhere else. They are doing the right thing. Have Faith Hope99!
Tina.
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Good morning ladies - hope the weekend will be a good one for everyone.
I’m glad to hear the permanent hair loss thing is only 6%, but the way my body is going I wouldn’t be surprised if I ended up in that percentage group.
Meowmmy65 - those oncologist on call numbers are nice to have when these side effects start happening. I used it three times already. First with my fall, my fever, and then the constipation issue. Let us know if the Benadryl takes care of your flushing.
I’m waking up with a sore back this morning and I don’t know why. I haven’t done anything physically to hurt it. Noticed it starting to bother me a little bit yesterday and tried some heat on it, but it didn’t seem to help. I wouldn’t think it had anything to do with my fall last week. I’m stiff on my back sides. Is this just another side effect? Anyone else have this happe?
I’m going to get some things accomplished today whether my body likes it or not.
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HI Tina, I'm sorry about your cousin.
I got your point, thanks for discussed. but I feel bad when I touch my tumour, how this monster will stay on me more than 4 months until I finish my chemo? why the doctor told me you are in early-stage, Stage 2A, and in the same time he worried about cancer cell's escape?! that's why I'm scare, he said it's better to you to do chemo first, surgery appointment not easy and takes time (arounf 3-4 weeks to do it).
I'm grade 3 tumour with HER2 negative, the tumour is aggressive and absolutely grow fast, I hope to clarify these fears from sisters here or my doctor if he give me time to discussions. someone told me also cancer cell may escaped in stage 1, that's why doctor try to be aggressive with all stages to avoid recurrences. who's know!
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blair2- about day 6 I felt like someone used me as a punching bad. Just hurt on my back, my arms, legs. Just this achy feeling. It came in waves and if I laid real still for a little while it would let up a bit. I ended up giving in and taking ibuprofen for it and it went away eventually. Oh and the cold has arrived to Clearwater, what was I thinking wanting I cool down....
Heading out to the mall to do some Christmas shopping, I’m going into day 10 and I think my numbers are pretty good to go into public. I burned myself on thanksgiving a week before chemo and it’s just now finally healing well. I figured that’s a sign I’m on the upswing.
Got my trusty bottle of hand sanitizer because I have learned people are nasty!! I had a lady at Walmart cough in her hand and then try to hand me my change back... yeah no.
Orangedaisy- I was all for hoping facial hair and body hair would disappear forever! No more shaving or plucking...how awesome would that be. Just keep that brows, lashes and head hair!!
Meowmmy- keep your chin up, we have all been there.
Everyone have an awesome weekend!!
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Frozentoes...Cute picture!! I am shedding like crazy and have to wear scarfs or a wig (when I go out). There are some good YouTube videos for working with scarfs. I picked up a new wig yesterday.
Blair...No worries! Your hair will grow back...maybe, with some curls. At least, mine did when I was on Taxotere. The curls didn't last long. Hope your back feels better soon. I'm always having aches and pains. I think it just goes with the territory.
Orangedaisy...I would definitely call the doctor's office. Not a good sign.
Meowmmy...Hope the Benedryl helped with the rash. Good advice to call with "any" problems whatsoever. I kept my port for a couple years after my initial treatment was over. I ended up getting a blood clot in the carotid artery. Be on the lookout if you ever feel any swelling or "tightness" around the base of your neck. I was diligent about having it flushed every 4 weeks. I had to have it removed and was on a blood thinner for 3 months. Now, I pray this new port doesn't give me any trouble.
Hope99...It's not uncommon to have chemo prior to surgery. Please don't be fearful. They are going to shrink that tumor!!
Well, I had my 3rd Taxol infusion on Thursday. Yesterday, I got a call that I was scheduled for an ultrasound of my liver. Apparently, my liver enzymes are out of sight! I know Taxol is metastasized through the liver, so hoping that's the culprit and not mets....I'm in no pain in that area. But, I sure am a nervous Nellie and will be until my appointment next Thursday -- which was my day "off" of Taxol. It's like being on a merry-go-round.
Have a good weekend, ladies!
Hope
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I hope you will be ok after checking you liver nonahope. which stage you are and what's your treatment protocols?
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hello ladies! I was so happy to find this forum, as I started my chemo cocktail (cytoxan and taxotere) on November 14. Wish I would have found it a little sooner as my first round was quite excruciating due to the Neulasta. I just learned that the neulasta infusion is a one-size fits all! Which explains why i had so much difficulty and a friend who is larger than me had no issues. My Onc has now prescribed morphine for bone pain (I'm allergic to Tylenol and the Tramadol he first prescribed gave me headaches) and Ativan for sleep.
This is day 4 after my second treatment and I woke up feeling surprisingly well! I'm planning to bundle up and get out (I'm in Michigan), and if it comes time where I need to take it easy, I'm allowing myself that freedom.
I had a friend say that this is a club you never wanted to be part of, but I appreciate so much all the encouragement and truth that these support groups offer. Hope you all can take some deep breaths of fresh (maybe freezing fresh?) air today.
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Hope99...I was treated for breast cancer in 2010 (lumpectomy, chemo, radiation). The breast cancer has metastasized to my bones and bone marrow. I am stage IV at this time. I started on an oral chemo drug combination of Ibrance/Letrozole in July of this year. It failed, after a bit over 5 months. I was switched back to chemo (Taxol). I had my 3rd infusion this past Thursday. I was told I would be on this for 4-6 months - 3 weeks on and 1 week off. I guess I will know more after my ultrasound. Hopefully, I will continue on this same protocol, as it has had minimal side effects so far. Worst side effect so far is the hair loss. I picked up a new wig yesterday!
Hope
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Doing great, ladies! Benadryl is a good thing.
Hair: I'm ready, although of course that hasn't started yet. Head shaving scheduled for December 21. I tried on wigs, but hated them. Will probably try again, but don't expect to change my mind.
Check out Wrapunzel. They have amazing video tutorials for scarf wrapping. That's what I plan to do instead of wigs. And, I picked up flannel to make sleep caps. Bald is cold, and winter is here!
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meowmmy, I am the queen of Benedryl and Claratin. I take Claratin daily and 50mg Benedryl at bed time. My hand rash was worse the first round and also got on my back, so I am taking both throughout treatment. One evening I had face and neck flush and called them, and they said take take benedryl. I said I already am. I don't have a port, so the redness is at the IV site. It didn't happen with the first treatment at that IV site. I may call today and give the on-call Nurse need something to do.
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Orangedaisy... Take your temperature (they will ask about it!) and please call them. It could just be a little infiltration from removing your IV, but you could have an infection starting. Better to call and be told not to worry, than it is to wait!
Big hugs!
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mama4gma3, I had the same sort of feeling on day 8, so day 7 after neulasta, felt like someone hitting me with a plastic mallet pounding along with my pulse. Started in the clavicle and sternum a little in ribs for an hour then intermittent in the day low back pelvic region. I didn't take panadol until bedtime as my liver enzymes are up the creek, hadn't taken loratidine for same reason. Had mild episode next few days. Had neulasta earlier today so we'll see how second dose goes.
Hope 99, chemo works on all cancer cells in you body. Each dose gets rid of some so there will be less in both your nodes and cancer itself. Yes quite common this way. Try and relax, and sounds like something to help sleep night before and before you start chemo. Highly recomend take someone to your drs and chemo appointments. Second pair of years pick up what you miss. Good luc
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No fever, no swelling, no blistering. Nurse says it is probably a flare reaction to Taxotere. That is what google led me to believe even before I called, but it’s nice to have it confirmed. She said manage with cold compresses and Tylenol if there is pain. It doesn’t really hurt. Feels like a mild sunburn.
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Binnibin....Has the chemo caused your liver enzymes to elevate? Mine are way high. I have an ultrasound scheduled for next Thursday. Just praying it's from the Taxol and not mets.
Hope
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Orange Daisy, I have a rash like that on my hip-second infusion was this past Wednesday. I'm also doing the wonderful Taxotere.
Blair-I'm hoping that you are starting to feel somewhat back to normal.
Tina~glad to hear you are feeling good enough for a trip out to shop-that is awesome!
Meowy-My second round was Wednesday and the steroids continue to flush me for a couple of days afterwards.
NonaHope-praying that it's the ole Taxotere giving your liver issues and not mets. You are a sweet, beautiful soul!
Charley Girl-welcome! I had my first infusion of TC on November 15 and just had the second this past Wednesday. This is a wonderful forum to talk with women who understand what you are going through.
Hope~ I am believing that ole "grade 3" will dwindle down to nothing and that chemo will kick it's butt!
Frozen toes-you cracked me up and you do have the most beautiful shaped head, girl!
Dives like a girl~Welcome! My shopping list for starting chemo included: B12, B6 and Gluatimine powder to thwart neuropathy and so far, it is working. Get Claritin for the bone pain from Nuelasta. I got Magnesium Citrate from CVS to help with constipation, so far, that hasn't been a problem. I got "Brian Josephs" lash and brow conditioning gel to put on my eyebrows and lashes. A friend of mine who was triple negative used it last year and didn't lost lashes or brows. I am also cold capping with Dignicap to keep my hair. There are also caps you can rent from Penguin if that is something you are interested in. Chemo is a whole new, strange world that I wish we all didn't have to join. But, we can help each other out on this journey.
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